Waiting for treatment options

Donna Faye
Donna Faye Member Posts: 427

Many of you will relate to this. I am waiting for my daughter to pick me up to go to my oncology appt. to discuss the treatment options. We are well prepared as son emailed questions to her last week so she will know what we need to learn. Nevertheless, my stomach is upset and my BP is rising as it always does for these appts. What makes it extra hard is I feel fine and have absolutely no symptoms. My legs are so much better after all the lymphedema massages, so it is like being forced to take a step closer to the fire when one is not cold! So, will add more tonight or tomorrow. But needed to do something to keep me occupied while I await my ride. I am so thankful for this group as you allow me/us to honestly express the truth. I try to be cool on the outside but my knees are knocking. Hugs, DF

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,033 Member
    Sending you PEACEFUL thoughts

    Sending you PEACEFUL thoughts my friend. Try to take a breath and know we are with you in spirit.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Looking forward to hearing

    Looking forward to hearing from you tonight or when you can Donna Faye. I have white coat hypertension and understand exactly what you are going through. I hope you were able to get clarity with your questions and are able to make a decision on next steps. 

    Love and Hugs

    Cindi

  • Donna Faye
    Donna Faye Member Posts: 427
    Not clear but better info and some time to think

    Wonderful 2-hour meeting with the medical team. Thank heaven my daughter was there to take in what I missed. The good news is I have up to 6 weeks to decide but believe will do before then. The vaginectomy does not sound like the best choice as she believes either the rectum or bladder or both could be damaged and would be living with a bag or two! At 80, I am going to have to mull that over.  The hormonal therapy does not work well on UPSC. She is very much interested in the lenvatinib/pembro immunotherapy.The side effects can be toxic but the results for those who tolerate it well are promising. I think that may be what I choose to do. I have sold my home and should close by March 1 and be settled into my son's home where we have a lady to help me should I be puny. There is the possibility of cleaning the V out once again like in Oct., but because of all the rads, the V is getting very scared and bleeding can be serious. I am now at home and the BP is down and the knees are not knocking. I know my time is getting short on this earth, but I am not sad as life has been 89.9% excellent! My major concern is that I not be a burden to anyone, but my kids all say it is their time to scare the monsters away. I have been greatly loved and will decide on what seems to offer all of us the best QOL. I hope my choice and my reporting to you on how things go will be helpful to others who join us on this lonesome road. Until next report, I remain at peace. df

  • BluebirdOne
    BluebirdOne Member Posts: 558 Member
    Thinking of you, Donna Faye

    as you make your decision. You and your family and friends have researched the hell out of this, had your two hour consultation (!) and now you are as equipped as well as you can be to make your decision. Grace under pressure. Thanks for keeping us informed. I am rooting for you no matter what. 

     

    Denise

  • Armywife
    Armywife Member Posts: 449 Member
    Hugs!

    We love you so much, DF.  I'm glad you have such a thorough team, in life and medically.  What a blessing!  

  • Fridays Child
    Fridays Child Member Posts: 254 Member
    Thanks for the update

    It's a hard call to make but I know you have considered all aspects and will make a good decision.  Best wishes to you and thanks for keeping us posted. 

    Edit to say, for what it's worth, when they were discussing the potential side effects of the pembro/levatinib combination, they said that the sponsor had told them that severe side effects "were not typical" in the study.

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited January 2020 #8
    Sending Prayers

    Bravery is defined by doing what you have to do even when you are scared. You have been the epitome of brave through all of this even though you had looked into ending things on your own terms. I could understand that, but really didn't want you to go that way.

    You sharing your thoughts and feelings has been a gift to us all.  Whatever happens, allowing your children to be there for you like you have been there for them will always be the best gift you could ever give them. 

     

  • jan9wils
    jan9wils Member Posts: 180 Member
    I am glad your meeting

    I am glad your meeting provided some good information for you are feeling the peace you deserve. 

  • Tamlen
    Tamlen Member Posts: 343 Member
    Scaring the monsters away

    Donna, it's a testament to you that you have such wonderful children -- I so fell in love with their comment that it's their turn to scare the monsters away. How awesome is that.

    You've done a great service to all of us by sharing your path through this next phase, your ups and downs, what you've considered and learned. Big hug to you as you decide how to proceed.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    Thoughts are with you

    Prayers too!  So strong! But of course we have no choice, do we?

  • Donna Faye
    Donna Faye Member Posts: 427
    Tamlen said:

    Scaring the monsters away

    Donna, it's a testament to you that you have such wonderful children -- I so fell in love with their comment that it's their turn to scare the monsters away. How awesome is that.

    You've done a great service to all of us by sharing your path through this next phase, your ups and downs, what you've considered and learned. Big hug to you as you decide how to proceed.

    Prepare to shed some tears

    Tamlen, when you are feeling very brave, go to you tube and get James Blunt singing Monsters. My daughter and I watched it together and we both wept and hugged but it is such a tribute to parents and their children when they can share this time. That's where we got the phrase.  I am so blessed with these wonderful adults who will always be my babes.

  • Donna Faye
    Donna Faye Member Posts: 427
    Always thankful for ya'll

    Feeling stronger this morning as I read all your comments and know you DO understand as we make choices as CQ said - "we have no choice" but to choose. I have never had to make such a difficult choice except when I asked for a divorce.  That was 25 years ago, but like now, I did not rush as I knew it was a life-changing choice. I need to decide what I can live with w/o too much anger as I do not do sick or puny well. I wrote a letter to my oncologist for yesterday's meeting and just shared my life with her. It was a great move as we probably connected better than we ever have as she too was a cowgirl in her youth in Montana.  She opened up about understanding now why I need to choose a treatment that will not make me hang up my boots. I always believed in the power of the written word. We high fived and said Ya Hoo!

  • Fridays Child
    Fridays Child Member Posts: 254 Member
    Good for you, Donna Faye!

    Love the comment about choosing a treatment that won't make you hang up your boots! 

  • barnyardgal
    barnyardgal Member Posts: 272
    Thinking of you as you ponder

    Thinking of you as you ponder your treatment options. Your dr sounds grest and I'm glad you have such a wonderful, supportive family!

  • Tamlen
    Tamlen Member Posts: 343 Member

    Prepare to shed some tears

    Tamlen, when you are feeling very brave, go to you tube and get James Blunt singing Monsters. My daughter and I watched it together and we both wept and hugged but it is such a tribute to parents and their children when they can share this time. That's where we got the phrase.  I am so blessed with these wonderful adults who will always be my babes.

    Well that made me cry

    Also made my husband, who lost his father years and years ago, break down and weep. Thanks for sharing this, Donna. What a moving song and video.

  • JillAndrea
    JillAndrea Member Posts: 30
    edited January 2020 #17

    Always thankful for ya'll

    Feeling stronger this morning as I read all your comments and know you DO understand as we make choices as CQ said - "we have no choice" but to choose. I have never had to make such a difficult choice except when I asked for a divorce.  That was 25 years ago, but like now, I did not rush as I knew it was a life-changing choice. I need to decide what I can live with w/o too much anger as I do not do sick or puny well. I wrote a letter to my oncologist for yesterday's meeting and just shared my life with her. It was a great move as we probably connected better than we ever have as she too was a cowgirl in her youth in Montana.  She opened up about understanding now why I need to choose a treatment that will not make me hang up my boots. I always believed in the power of the written word. We high fived and said Ya Hoo!

    I can relate!

    I can so relate to that divorce decison taking so long.  I was in a bad marriage for many years, but even when I knew I didn't want it anymore, it took me two years to work up the courage to change my life and leave.  I saw a therapist during that time, and she always said, "When you come to terms with how you want to live from now until death, you will know what you need to do."  Once I got through that hurdle, what a relief.  I moved out, got a beautiful apartment, got a better job, and better relationships with my friends, and within a few years I was dating.  And then I met my current husband, who is such a blessing in my life.  I can't even imagine having been married to anyone else.

    This cancer thing is SO different. While I know that I technically have choices, choosing to let the cancer "win" just doesn't ever seem like the right choice.  And even if our cancer is slow-growing, I wanted it gone ASAP.  What is so unsettling is not knowing if it is really, really gone.  Its kind of like wondering if your ex-husband is actually still living in the walls of your home.  Ugh.

    I am starting 5 rounds of brachy in March... scared out of my mind, but I don't feel like any other choice is the right choice.

     

     

  • Donna Faye
    Donna Faye Member Posts: 427

    I can relate!

    I can so relate to that divorce decison taking so long.  I was in a bad marriage for many years, but even when I knew I didn't want it anymore, it took me two years to work up the courage to change my life and leave.  I saw a therapist during that time, and she always said, "When you come to terms with how you want to live from now until death, you will know what you need to do."  Once I got through that hurdle, what a relief.  I moved out, got a beautiful apartment, got a better job, and better relationships with my friends, and within a few years I was dating.  And then I met my current husband, who is such a blessing in my life.  I can't even imagine having been married to anyone else.

    This cancer thing is SO different. While I know that I technically have choices, choosing to let the cancer "win" just doesn't ever seem like the right choice.  And even if our cancer is slow-growing, I wanted it gone ASAP.  What is so unsettling is not knowing if it is really, really gone.  Its kind of like wondering if your ex-husband is actually still living in the walls of your home.  Ugh.

    I am starting 5 rounds of brachy in March... scared out of my mind, but I don't feel like any other choice is the right choice.

     

     

    The bracky is not bad

    I've had 8 - 4 once and then 4 more. My rads doc is fantastic so the treatment was not hard at all. 25 pelvic as well and again, just some bladder and bowel upset but settled down in a few months. Easier than a divorce for sureInnocent You'll be fine!

  • MoeKay
    MoeKay Member Posts: 403 Member
    Wishing you all the best as you make your decision

    Hi Donna Faye, I want to wish you all the best as you decide on which treatment option to pursue.  It sounds like you have fantastic family and medical support systems, which will be invaluable in reaching a final decision with which you will be most comfortable and at peace. 

    I remember a social worker who facilitated a cancer support group I attended many years ago saying that people deal with cancer the same way the have dealt with all other major life challenges.  I sense that you've been a wise decision-maker throughout your life and that this decision will be no exception. 

     

  • EZLiving66
    EZLiving66 Member Posts: 1,476 Member
    Donna, I read your posts with

    Donna, I read your posts with tears in my eyes. I have envisioned your path to be mine someday and I hope I can handle it with your grace and dignity. Life is so fragile and so precious but the quality is so important too. All my best to you and your lovely family!

    Love,

    Eldri

  • Donna Faye
    Donna Faye Member Posts: 427
    Thought for today

    I updated my picture so you could see my army! That was a couple of years ago at Faye's Frolics which we try to have once a year. As I ponder my future, I wanted to share something. This speaks to me because I have always tried to control everything to avoid disaster. Sometimes, things fall apart no matter how hard you try to avoid it. Now I must learn to be comfortable with uncertainty. " A warrior accepts that we can never know what will happenen to us next.We can try to control the uncontrollable by looking for security and predictability, always hoping to be comfortable and safe. But the truth is that we can never avoid uncertainity. This not knowing is part of the adventure. It is also what makes us afraid. Learning to live with uncertainty is how we learn to relax in the midst of chaos. How to be cool when the ground beneath us suddenly disappears." Pema Chodron